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Sunday, September 1, 2013


Yesterday the doctors started talking to us about changing Ben's status from full code to do not resuscitate. We had been expecting it, but it still seems surreal. Stacey and I had been starting to discuss it, both between ourselves and with Dad for a few days. It has been so hard.

When I went to the hospital yesterday, Ben looked different. He didn't look comfortable. He looked sadder. He wasn't resting. His moans had gotten louder and the tone had changed. Gone was the calm reaching for the sky, like he was looking for something.  His arms  were now crossed over his abdomen in a guarding way. He was obviously in pain. A lot of pain.

I tried to comfort him as much as I could. I talked to him. I read messages from, oh so many, well wishers and friends. So many people praying for him. So many nice things being said about him. I read every single one. I turned on his music. I stroked his head.

When we went on vacation as a family we quite often went to South Dakota. My mother loved South Dakota. I remember going there a few different times as a kid. I know we went to the normal tourist places, Wall Drug, The Badlands, Mount Rushmore. We went to them all on one vacation. 

On another vacation Mom wanted to hit the road less traveled. She was a history buff. One of her favorite places to roam were grave yards. We went to a lot of Native American burial sites. I can't remember for sure which ones, I was maybe six or seven. I remember spending a lot of time at the sites as my mom read each and every stone. 

Somewhere along the way, I got sick. I was throwing up, had diarrhea, the works. We were kind of in the middle of nowhere when it struck. I was usually stuck in the middle of the back seat of our tiny corvaire. I do remember being by a window for this particular trip. I can't remember if Ben or Stacey let me have their window seat. I just remember lying in the seat, with my head on someones lap, and occasionally leaning with my head out the window. I was miserable. 

Mom wanted to go to the Rosebud Reservation. In Rosebud we stopped at a drugstore. We went in. My mom was by my side and my brother was following behind. I felt like he was back there making sure mom got something to make me feel better. He was protective of me as a kid. Though he may have just been tired of the smell of my puke. Either way he was there. 

Mom asked the man in the store if he could recommend anything. The man was a Sioux, I'm not sure if he was Dakota, Lakota or which nation he belonged to for sure. He looked middle aged to me, of course at six or seven a 29 year old looks middle aged. He said he could make something for me that would make me feel better. My mom took him up on it.

I have no idea if the nice man was a pharmacist, or a doctor, or a medicine man. My brother seemed very skeptical of the man. He looked at mom like she was crazy to give me something from this very nice but still a stranger, that she found in this broken down store. 

The man brought out a bottle that looked like a bottle of Coca-Cola. It wasn't labeled as Coca-Cola, but the shape of the bottle was the same. The man encouraged me to take a drink. I looked at Mom, and then at Ben. Ben looked at the bottle and whispered, "Mom..." under his breath. She shushed him and told me to drink it. I looked at the bottle and put it up to my lips, looking again and Mom and Ben. Ben was shaking his head, while Mom told me to just drink it. 

I took a small sip, expecting it to taste like something a wicked witch had brewed in a cauldron. It didn't, it actually tasted good. It tasted like a thicker version of Coke. A little more syrupy, but not bad at all. I drank as much as the man said to and stopped. He told my mom to give it to me every four hours until it was gone. 

After the first dose I was feeling better. Not perfect, but better. We went on our way. We had a long drive ahead of us. In an non air-conditioned car, in August, if I remember right. 

As we went down the highway it was time for another dose of the mystery medicine. By this time it was warm. It wasn't good warm. It had gotten thicker. It was harder to swallow, but swallow it I did. 

Another four hours down the road in a hot car. Another dose due. Mom gave it to me. I started to try to take it. It was hot and very thick by now. It no longer tasted like Coke, it now tasted like hot molasses pretending to be Coke with a cough medicine after taste. I gagged trying to swallow it. Mom yelled at me to drink it, "It can't be that bad," she sneered. Ben tried to stick up for me and was glared down. I tried again to swallow it and gagged again. 

Mom was really mad by this point. She grabbed the bottle from me and threw it out the window. I cried that I was sorry. Mom just glared. 

To this day, I do not drink Coca-Cola.

Ben did not quiet as I stroked his forehead. Up until this point, when he was moaning, I was able to quiet him that way. The pain was too intense. I kept trying. I started to weep.

I came home and told dad how Ben was. We talked again about what he would want. If his heart stopped, would he want to be brought back to live in this condition. Dad's face went very sad. He had had a bad day with his memory. Willie told me he had been very confused all day. He was again referring to Ben as his brother. He was again mistaking the situation.

When I talked to Dad, he snapped back into the present. He understood what and who I was talking about. I was preparing him to make probably one of the hardest decisions of his life. How do you make a decision like this about your own son.

Today Stacey came out and we all talked. We know Ben would not want to live like this. He may be able to tolerate not being able to move, if that were the problem. Not being able to communicate, to talk, to be understood? Not even be able to write, or type, no ability to communicate at all, possibly ever again? That is NOT my brother. That is not him in any way. If his heart were to stop, would he want heroic measures to keep his body alive? A body that is so tired, and that is failing him in so many ways at once? Would he want a tube shoved down his throat to make him breath? Have someone beat on his chest, possibly breaking his fragile ribs, and shocked and shocked again to keep his big, loving, kind heart pumping?

We talked for a long time. We all knew what Ben would want. It may not be what we would want, but we needed to leave it to him. We decided not to give up all hope. We would ask the doctors to keep treating him whatever way they could. Keep trying to figure this out. However, if his heart stops, if his breathing slows, no heroic measures are to be taken. No beating his chest and breaking his ribs. No intubation and respirators. No zapping him.

 If he starts to peacefully slip from our lives, if his very ill, very tired body begins to fail him, we will let him go. We will let him go to meet Our Lord that he loves so deeply. We will let him go to be with our grandparents and mother. If he slips away from us, it is only a body that will leave us, his big, kind loving heart will live on in each and every person he has touched.


  1. Becky - you've taken my breath away. Cynthia

    1. Thank you, and thank you for caring about my brother.

  2. I've been following your posts on Ben's Facebook page. Ben is lucky to have a sister like you. Elizabeth Keggi

    1. Thank you, my sister Stacey has been his greatest advocate though.